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    Getting KAFOs

    I'm currently living a life very much ruled by Mr. Murphey's law, so I really REALLY need this one thing to go right. Seriously, I can't take much more of this crap storm.

    I have been approved for KAFOs. I'm a T4 ASIA A, 4.5 years post, I have some hip flexors and I have small gains in many places.

    I was cast yesterday for my KAFOs but there was a disagreement between the Hangars guys and I'm looking for some input here so I don't end up with thousands of dollars of useless graphite....

    The first guy was casting me up to about mid-thigh and selected a light-weight brace with drop locks at the knee. Then the other guy decided he was doing it all wrong and I'd never be able to use them. He chose a different style of brace, still lightweight with drop locks at the knee but he cast me all the way to my butt. These will be full leg braces, still light enough to swing but supposed to provide more stability. He also said, they'll be hot to wear -- I live in Phoenix.

    My plan is to use the lite gait at a nearby rehab gym and hopefully, take a few independent steps (with crutches or walker) at the finish line of this year's marathon.

    At this point, I don't know enough to discern who's advise is more beneficial. But they kinda scared me with a long lecture about how hard they would be to use and how no one ever really uses them and I'd have to sign a commitment for the braces.

    All I know is had I had more experience, I wouldn't be sitting in this wheel chair, I don't want to make the same mistake with my KAFOs since this appears to be a singular opportunity.

    KAFO's all the way up to the butt or mid-thigh? Any input?

    TIA
    My blog: Living Life at Butt Level

    Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

    "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

    Dawna Markova Author of Open Mind.

    #2
    This is so very new to us as well (8 1/2 months). Our son's (T-12 ASIA A) are actually HKAFO's and have a hip/back piece. The back looks like and is made from the brace he had when first injured. The legs were cast all the way to just below the butt. The legs are made of carbon fiber. Don't know how hot they are cause he sweats all the time anyway.
    FAITH: Is not believing God can, but knowing he will.

    Comment


      #3
      I understand you have movement at the hips. You may or may not develop movement at the knees in the future. If you have drop locks you will never be able to use your knees if anything develops. You need a brace that is looking for you to recover function. There are several knee joints (friction, stance control...) that should be taken into consideration. If Hanger or your orthotist is not interested in entertaining this thought look for someone who is more open minded.
      “As the cast of villains in SCI is vast and collaborative, so too must be the chorus of hero's that rise to meet them” Ramer et al 2005

      Comment


        #4
        Jen, my daughter has KAFOs - high thigh (about 3 to 5 inches down from the hips), but not to the butt. I wish they were higher. Shriners didn't like that they weren't high enough in the thigh and didn't like that the plastic support was in the front and not the back. The joint can be locked all the time or set so the knee can bend and then lock depending how you swing your leg (a newer stance control). My daughter is a T12 (functional level l1 on her right and l3 on her left). She can hold her left leg out straight while sitting (lots of quads at work). Shriners is making HKAFOs for her because she is struggling with the KAFOs. A lot of the problem we found is because one of her legs is longer, plus she has a lot of tightness in her hips. When they added height to her shoe it made using the KAFOs much easier. I agree with Shriners as they aren't high enough and the support should be in the back as she has a lot of quad strength. I don't think my daughter needs the HKAFOs just a higher KAFO with the support in the back. We worked with Brett at Hanger and he is really great, even though the KAFOs aren't working out as well as we hoped.

        I hope this helps.

        Comment


          #5
          Take your time and ask what all the options are. I was disappointed with my KAFO's since they were not exactly what we discussed. I also assumed that the orthotist was telling me about all the options. Ask for a written quote on the cost as well. My quote was verbal and my out of pocket cost was as much as the original verbal quote.
          Injured 7-22-06, T-11 T-12 complete. [Holds up cardboard sign] "Will work for returns."
          2010 SCINet Clinical Trial Support Squad Member
          Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

          Comment


            #6
            Thanks for the info everyone. It will help me make a better decision.

            Willy, I do have some very faint movement at the knee. In the water I can swing my feet while in a seated position. It's very weak but definately there. Unfortch, I have two choices in providers, Hangar and Hangar. They are the only approved provider.

            I had not considered the knee joint so I'll work on that now. So, up to the butt is ok?

            Carolyn, Like Jessica, the original orthotist was going to put all the support in the front of the KAFO and now it's mostly in the back with my knee "strapped" (my word not their's) to keep it from collasping.
            • Am I going to be able to put these on by myself? I live alone...
            • Can I wear them all day?
            • Will I put them under or over my clothes?
            • Do I need cloth between me and the brace? I wear as little as possible without being arrested here in the summer. We're experiencing a delightful cooling trend with temps down under 110.
            My blog: Living Life at Butt Level

            Ignite Phoenix #9 - Wheelchairs and Wisdom: Living Life at Butt Level

            "I will not die an unlived life. I will not live in fear of falling or catching fire. I choose to inhabit my days, to allow my living to open me, to make me less afraid, more accessible, to loosen my heart until it becomes a wing, a torch, a promise. I choose to risk my significance; to live so that which comes to me as seed goes to the next as blossom and that which comes to me as blossom, goes on as fruit."

            Dawna Markova Author of Open Mind.

            Comment


              #7
              They made me HKAFOs and I cannot put them on by myself. We have to "sit" them in my chair and then I have to drop into them from my bed with someone guiding my legs. They are a pain in the arse. Once I am in them, they do help me with standing and movement. However, if I am all locked in, I cannot reach my knee locks (because I cannot bend over) and if I try unlocking the hip part, I cannot feel the release through clothes...or even...on the brace itself if I am wearing them on top of my clothes.

              Those are some concerns I would bring up...as you want these to help you be functional...but you do not want to be stuck with things in the corner you do not use because you cannot be independent with putting them on.
              "Unless someone like you cares a whole awful lot nothing's going to get better. It's not." - Dr. Seuss

              Comment


                #8
                JenJen, Check out my son's HKAFO's they were specifically designed to digress as he gets more return so that we don't have to purchase new KAFO's, then AFO's, etc.. they are truly an amazing piece of cutting edge technology. He was walking in them first try and after only 3 weeks, they unlocked the knees to promote a normal gait pattern.
                He is able to put them on himself, despite how heavy they are. He can also stand from a seated position and sit from a standing position. Unfortunately, because of back piece, they must be worn over his clothes. When he progresses enough to have the back removed, they can be worn under his clothes. They make a clicking noise every time each knees engages, so he won't be able to sneek up on anyone!
                http://www.youtube.com/user/CalebsJourney
                Last edited by Faithful1990; 14 Aug 2009, 2:37 PM. Reason: forgot to place the link
                FAITH: Is not believing God can, but knowing he will.

                Comment


                  #9
                  JenJen, she can put the KAFOs on herself, but we help as it is difficult to get her foot in the shoe. She would have trouble with that. I bet you could do it yourself. They strap with velcro in the back. She is only using them in therapy. She can wear them without clothing under, but you have to be careful that they aren't rubbing on the skin. Probably better if you have some thin pants under, although she typically wears them with shorts. I don't think they would be comfortable enough to wear them all day and it would be a lot of work to use them instead of a wheelchair for everyday use unless you have a lot of return and are very determined. Jessica doesn't like them on unless she is in therapy using them. She likes to get out of her chair a lot scooting and crawling and they would really limit her getting in and out of her chair to the floor and moving around like she does. Also keep in mind that she isn't using them to the max because of tightness and they haven't taught her to use the joint correctly, plus the support in the front instead of the back . . ., why we are moving to a HKAFO. Maybe the HKAFO will work better for her, but she has a long way to go before using the KAFOs or any braces in a everyday setting. You might ask them about starting with a HKAFO first like Faithful1990 where the back piece can be removed.

                  BTW - we are planning to take Jess to Project Walk in October. They don't believe in using braces at all. I understood that it is like casting and doesn't promote recovery, because you aren't relying on the muscles in your legs. I'm not sure I totally agree. I'm thinking that working the legs without the braces is important, but sometimes you need the bracing to get upright. I might come back with a different opinion. We will see.

                  Comment


                    #10
                    My son used KAFOs about 2-6 months after he was injured. They were a molded plastic with drop-lock hinged knees -- one of the legs had a release back low on the back side of the thigh so he could release one leg to sit down. They went all the way up his legs -- to just below his butt -- High enough that he would sometimes sit back on them a bit when he was tired in PT

                    He later progressed to AFOs -- rather than get rid of the KAFOS the ortho people simply removed the top part and hinges and we now use them as a backup pair of AFOs -- they've come in handy.

                    Good luck!
                    Ugh, I've been kissed by a dog!
                    Get some hot water, get some iodine ...
                    -- Lucy VanPelt

                    Comment


                      #11
                      Your PT must work with those customizing your KAFO's. If provided with the incorrect KAFO's it will have a negative impact on your therapy sessions. This equipment is too expensive for a mistake to be made and a second request to your insurance provider for a corrected pair could easily be denied

                      Comment


                        #12
                        JenJen, please keep us updated on your KAFO progress. I would love to see pictures of them and videos of you walking in them.

                        Comment


                          #13
                          Originally posted by Faithful1990 View Post
                          JenJen, Check out my son's HKAFO's they were specifically designed to digress as he gets more return so that we don't have to purchase new KAFO's, then AFO's, etc.. they are truly an amazing piece of cutting edge technology. He was walking in them first try and after only 3 weeks, they unlocked the knees to promote a normal gait pattern.
                          He is able to put them on himself, despite how heavy they are. He can also stand from a seated position and sit from a standing position. Unfortunately, because of back piece, they must be worn over his clothes. When he progresses enough to have the back removed, they can be worn under his clothes. They make a clicking noise every time each knees engages, so he won't be able to sneek up on anyone!
                          http://www.youtube.com/user/CalebsJourney
                          Hi faithful1990,
                          What is the name of those braces? I wear a locked kfo and would be interested in what your son uses. I am also a t12 incomplete, almost 6 years post injury. I use to wear a stance control which unlocked at the knee but it doesnt look like the locking/unlocking mechanism your son has. His looks like he can get a much smoother step than the one i use to have. My stance control was made almost 5 years ago but i do not wear it anymore ( i switched to a lock kfo after 2 years b/c the stance control was slowing me down and would sometimes buckle, not a huge buckle but enough to startle me) Thanks for sharing your video. Here is the link for mine which shows my old kfo. http://www.youtube.com/watch?v=0dneU_ZrF0E
                          Last edited by Chelley03; 6 Sep 2009, 12:43 AM.

                          Comment


                            #14
                            Originally posted by JenJen View Post
                            Thanks for the info everyone. It will help me make a better decision.

                            Willy, I do have some very faint movement at the knee. In the water I can swing my feet while in a seated position. It's very weak but definately there. Unfortch, I have two choices in providers, Hangar and Hangar. They are the only approved provider.

                            I had not considered the knee joint so I'll work on that now. So, up to the butt is ok?


                            Carolyn, Like Jessica, the original orthotist was going to put all the support in the front of the KAFO and now it's mostly in the back with my knee "strapped" (my word not their's) to keep it from collasping.
                            • Am I going to be able to put these on by myself? I live alone...
                            • Can I wear them all day?
                            • Will I put them under or over my clothes?
                            • Do I need cloth between me and the brace? I wear as little as possible without being arrested here in the summer. We're experiencing a delightful cooling trend with temps down under 110.
                            Hey Jenjen,
                            I wear a KFO that goes all the way up to my thigh and an afo. My KFO is plastic with 5 straps in the front to hold down the leg.

                            *I am able to put them on myself. I pick up my left leg and put my foot in first b/c its the toughest part to get in. I can do it from my chair.
                            *I do sometimes wear them all day.
                            I have to wear larger shoes to prevent blisters. A whole size larger is what my PT recommended. I come to accept that my feet look long in them but who cares =) You have to try shoes out b/c you can tell a difference in walking. Nikes work the best for me. I have the same pair in 3 diff. colors b/c they dont give me blisters, sores, and they are great to walk in and still somewhat fashionable.
                            *I wear those thin leggings (target sells them for about 6 dollars) before i put my brace on and then i put pants or capris over. I made diff. lengths ones by cutting them so if i wore capris you couldnt see it. I did that b/c i sweat in them big time. The plastic and my skin dont go well. It also helps prevent skin problems to have something inbetween. They are thin so it isnt as hot but the braces themselves can keep you warm.

                            *You gotta do some trial runs with shoes and clothes to see what you will be most comfortable in. I use to wear mine on the outside until i figured out that i could wear tights or leggings plus the braces underneath my pants. Also, taking out the insole of the shoe gives you a little more breathing room for your feet. Anything to prevent the skin blisters is essential. I havent had one in a while which is a really good record =) Watch what shoes you wear and always check the straps, and your toes before you get up. Everytime i take off my braces i check out my entire leg b/c sometimes things are rubbing and you dont know.

                            Good Luck and cant wait to hear about the good progress. Message me if you have any questions.

                            -Chelley

                            Comment


                              #15
                              Jen Jen go as high as up to your hips as you can. I have kafo's and they came up to my mid thighs. I am a T-9 asia complete. I have some hip flexors. I got up to walking 100 feet with my kafos an a walker however in doing so I tore my labrum and dislocated my hip. Now I am in the hospital after going through hip replacement surgery. This is not something you want to go through just to stand an take a few steps. So get as much support in your hip as you can. Hope this helps...

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